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Wednesday, March 19, 2014

Different than we imagined, and even more beautiful

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Thank you Make~A~Wish
We were blessed with a week together! A week of loving up our kids, spending quality time with our bigs, and praying for Ivy who declined as soon as we arrived, to be blessed with a magical memory a day!



 In the realm of things, and considering that this trip was a gift and a wish come true, I reminded myself continually that even though the trip was different than we'd envisioned due to precious Ivy's reaction to the flight, She was ABLE to take this trip! She is not currently waiting for a heart~ her own heart IS working! She has been home with us for 2 YEARS after being deemed TERMINAL! She has blessed the socks off of our family! We DO have so much to give thanks for!

At the time of the trip, no one was concerned about the flight. The doctors didn't even flinch an eye at her flying to Florida. But the last time she flew, she WAS still on oxygen. 

We arrived at Give Kids The World Village on Saturday. 







Below are photos of Merry the Rabbit. She comes to tuck the kids in to bed when they stay at Give Kids the World. Ivy felt too icky to be interested but Lexi loved her.





Our sweet Lexi is the most mellow, understanding, patient 5 year old I've ever met. It was so beautiful to see her delighting in every part of this day. Because we've ALL been through a lot. Perhaps not physically, but she has handled a great deal for such a little one. At the end of the day, she said, this had been the best day ever! A limo picked me up, my whole family is together, Ivy and I get to sleep in the same room all week, and a bunny rabbit put me to bed!
God ended the day with a blessing for the parents. A reminder that this family was hand crafted by Him and He knew each and every one of us and how we would all fit perfectly together. And how very very blessed we are!

Sunday morning we had reservations for breakfast with the princesses. These reservations were so hard for us to get. I must have called 15 times trying to make this happen! 
Ivy was not going to enjoy it feeling like she was. We Canceled it. 
We were supposed to meet Anna and Elsa after that. We postponed that. We did not want to waist this opportunity while Ivy was clearly not feeling well. We would wait it out until she was back to herself!
So at this point all plans changed, reservations were canceled as they came up, and we just waited it out. Throughout the entire week, we didn't even realize it was the flight that caused Ivy to turn so quickly. 

She seemed fine on the plane. (But she was asleep...)

It was in the first night there that she showed us she was not feeling well and it got worse instead of better.  Coughing and coughing this unique uncontrollable unproductive cough that resembled the sound you hear coming from a very old woman who had been a chain smoker her entire life. (Makes sense now..)


We were all praying that she would get rid of this new ~cold~, stop this strange cough and she would be herself. We suspected a UTI at the same time so we got her on antibiotics. The symptoms of that left quickly but she continued to get more and more puffy (something that heart kiddos do when they are ill) and had zero energy. 

I decided to ask God for something different. Whatever was going on, she clearly needed time to get better.  
Our hearts broke for her. I almost curled up and had a pity party. And then I reminded myself how blessed we are! We were together. She had everyone here to dote on her. We had access to all she had wished for and when the time was right, we would get her there in a heartbeat! 

So we changed our focus. We regrouped. We set the new pace, a pace that fits in right below super slow. 
And I prayed. I asked God for just a blessing a day. 
Just one delightful thing for her to find joy in and feel good enough to make one special memory each day.

So after spending Sunday sitting around doting on the girls and letting Ivy rest, we decided to take the family to the Magic kingdom for the 3pm parade. 

Little did we know this was opening day for this brand new parade. Little did we know that Anna and Elsa were in this parade. It was so hot and humid on this particular day. But she made it to the parade, and it was beautiful! Anna and Elsa looked right at the girls and blew a kiss. 

We headed right out of the park after the parade. 
This was our beautiful blessing for the day.
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On Monday we attempted an afternoon trip to Universal Studios. We had 3 day passes to Disney Parks and we didn't want to waste all our days at once in case Ivy ended up feeling better by the last day. We were in and out of Universal in what seemed like minutes. Ivy was too short for all of the rides and she was not impressed with Dr Suess World or anything that squirted water. 

                        Lexi in Suess world.


The big kids felt so sad for her and insisted they didn't want to do anything without her so we headed back to Give Kids The World. The Villa we were staying in was situated right across from a beautiful playground set up like the game Candy Land. When we got back to the Village she mustered up enough energy to ask to swing at the playground. She was so happy to have her big sister Rylee at her every command. She adores her big sisters and is so sad every morning when they leave for school. So a whole week of the big girls NOT going off to school made for a very happy girl. 



Our blessings for the day, swinging for a short time on the Candy Land playground and cuddling all day with big sisters.
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Tuesday morning Ivy slept in.  Her cough kept her up and down all night. I asked Bryan to take our big kids out for the day to enjoy all the fast rides and the super cool Harry Potter World. 





They had a great time with dad!! 

I had hoped that we could get out to the Merry Go Round and ride the train right there at the Village but that didn't happen, Ivy slept most of the day making up for the rough night she'd had. Lexi was an angel staying by her side all day. 

On this night we had reservations for dinner with Cinderella! Since she had slept so much I figured we could keep the reservation. She said she wanted to go. I am SO GLAD we did!! She loved everything about it!









Dinner with Cinderella and Prince Charming! This was the special blessing of the day!
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Wednesday early afternoon we could see that Ivy was really beginning to turn a corner. Her cough was keeping her up less at night and she was walking a bit more. We headed to Epcot late morning. It was time to see Anna and Elsa! 

Her WISH!




It was as if Anna knew what we went through to get to her.




                               
                                 
Ivy was sound asleep until just seconds before this moment. I woke her up and told her we were in Arendelle! Anna knew nothing. But, something made her show our daughter PURE JOY! And tender sweet love. And 10 solid minutes of cuddles and conversation and playful visiting. Both girls were in Frozen heaven. The Arendelle Princesses treated the Sammons Princesses like royalty. They told the girls they too used to dress alike as little princesses! Lexi and Ivy thought that was so cool! 











I think it goes without saying, but this was the special blessing of the day!

Ivy still had some energy left after this so we spent some magical time at the magic kingdom riding rides visiting the characters, and seeing ALL of the princesses! 






          
                                   Tuckered out!
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Thursday morning we had breakfast with Pooh and Tigger and some very treasured friends of ours from New York. 









We planned to take the little ones to Disney Junior Live and then see how everyone was feeling after that. They did love Disney Junior Live.


 However, meeting up with our dear friends and spending the afternoon just playing in the pool and sand and roasting marshmallows with them proved to be the perfect way to finish out the trip. The bigs went off with the dads to ride rides and the little went off with the moms to the Grand Floridian. 










Ivy was acting more and more herself with every passing minute. 

She was finally getting over this cough.. COLD.... OR WHAT WE THOUGHT UP UNTIL NOW WAS A.. cold!

Our blessing for today, an afternoon making memories with our dear friends.
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Friday was our last day. Our flight was to leave at 5pm so we spent the day packing up and doing all the things at the village that we had not been able to do with such a sick girl.

Merry Go round



Having a special star with her name on it placed in the castle of miracles by a fairy! 

The entire ceiling is covered with the little gold stars of all wish kids. 



Making a real pillow at the weeping pillow tree!









               Swimming and eating ice cream!



Our blessing of the day, a healthier little girl making memories at Give Kids The World!
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It was not until Ivy began coughing and gasping as we flew home This time during the flight.. that it clicked! 
She was not suffering from yet another cold. She was suffering from lack of oxygen. She needed oxygen on the plane! I won't go in to details, we are home and safe. She is doing magnificent. 48 hours after getting home she is running fast again, she looks fantastic. Again, so grateful.

Raising Ivy is a gift. Yes, its work, its always full of surprises, its often scary, but it is FULL of treasure. Someone on the plane said to me that it was such an amazing thing that we took on such a burden. 
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Honestly, I don't get mad at things like that. It was not meant to hurt. But I will take it as an opportunity to share that she in not a burden. She's our daughter and the journey she has taken us on as we stand by her side brings much desire and far more discipline to keep our eyes and hearts set on Jesus than a life without her. Such an honor to be a parent, isn't it? Such a blessing to be entrusted with these beautiful children!!! 
Thank you Make A Wish for giving us this time with our family and making our little girls WISH COME TRUE! Pin It

Friday, March 7, 2014

The countdown is over

Pin It We are out of here!!! 
Ivy was contacted by Make~A~Wish 9 months ago. 
They presented her with the options of A Disney Cruise and The Disney Island in Hawaii. 
That would have been such a magical time for the family. But it was Ivy we were trying to please, not us. And honestly the thought of having our girl on a boat in the middle of no where in her condition was way out of our comfort zone. 

So we ever so gratefully declined. 

We also declined Hawaii for a few reasons. Again.. we would have LOVED to spend a week in Hawaii, don't get me wrong! But Ivy was on oxygen, she was being prepped to list for a transplant, and she had never seen miles of sand. We still can not get this girl to walk barefoot on the grass! I was not convinced that it was really her wish. Hawaii is far from her care facility and at the time the pkg was presented to us we were just scared out of our mind, having just changed from Boston to Lucile Packard for her care, living in Arizona, we were just so torn. So after talking to her doctors, everyone felt that a simple trip to Florida, Disney world and Universal have much to offer in the fun department, and Give Kids the World Resort for Wish Kids was the perfect place to relax if she was not able to handle more than a few hours at the parks. 

Since her wish was put together, lots has taken place. But the date was always set as March 8. 
Originally it seemed scary to set it so far ahead. Ivy turns on a dime, and you just never know where she would be or what she would be dealing with in 9 months. 

And yet, the timing is perfect. God perfect! Never create your own mold of how you think things are supposed to be or look. He knows. He knew that last summer it would have been way too hot for Ivy to be at Disney World. He know that August-Sept.  she would be recovering from a surprise Brain surgery. He knew that in October she was still sensitive to altitude. He knew that she would come off oxygen and have so much more freedom traveling without it! He knew that she would be struck by a horrible flu that would have her off her feet for nearly a month. He knew that in March she would be stronger!! And Stronger she is! She has just fought off yet another cold this week and outside of a big purple bruise on her forehead from face planting on a piece of wooded play food pizza.... She is doing so well!

Our Suitcases are sitting by the door! Ivy is absolutely out of her mind ready! Both girls are! Actually the whole house is! We can not wait to see the little ones faces when they meet Anna and Elsa in person! Gods timing is perfect!
I will try to post once while we are away, but no promises... This trip is about family time so unless someone is napping, I will be too busy playing to post!! If there is napping going on, expect LOTS of pictures. I want Ivy to have books and books of photos to look at in memory of this week. She is so young, the photos will be the way she ~remembers~. Thank you everyone for the sweet emails, letters and comments. We love you all and we know you are Ivy's biggest fans. 
Blessed be the Lord! He loves us so! 


I leave you with some sweet pics from the past week. The little boy is my friend Aprils son. He was our little guest while his mommy was in Spain for the week. Poor Mommy, had to go to Spain :)

The best thing Ive ever done with my spare time is put the girls photos in to picture books. They love their China stories more than anything!


 Lexi had her first dance competition last weekend. Her super supportive baby sister by her side! 



I think my favorite thing right now is stepping back to watch the girls interact. They love each other so much. They are as different as fire and water but as compatible as bread and butter.
  

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Tuesday, February 18, 2014

Itches and wishes

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 We have had a terrible week of the worst case of hives I have ever seen. Poor Ivy, this girl just can't catch a break!!! She had an allergic reaction to her antibiotics and was absolutely covered in the most itchy uncomfortable outbreak beginning Valentines Day. Sweet girl was in pain and so itchy. Today is day 5 and I feel like we have turned a corner. She is still covered, but the swelling is down and the itching is less. Saturday morning her hands and feet were so grossly swollen that she could not walk or use her hands. Anyway, I won't amuse you with all the photos I took of the different stages of this rash... it really was interesting to see the progression. I will post happy photos leading up to the day the outbreak occurred instead :)








                       Ready for school




No luck getting a shot of them both looking at the camera. You have no idea what a dream come true it is for me to see my little Ivy Joy climbing on this gate. Such a huge milestones happening for this sweet girl! And blessed with the sweetest, most patient big sister on the planet. Lexi is honestly the sweetest little girl.



Maybe I should try and photoshop both the above pictures together so that both littles looking at the camera?



Last week there was a surprise party for Ivy at Red Robin to reveal to her that her wish to see Rapunzel, Anna, and Elsa would be granted.




She swore it was her Birthday!






This is Monica, her wish grantor. Ivy loves her. She is such a little lover girl! 





When the staff at Red Robin heard that the party was for Ivy (they know of her) They all joined in with make a wish and showered her with gifts. Again, Ivy turned to me and said... See! Its my Happy Birthday!!!



Our crew all sporting Make A Wish Bracelets.



 Red Robin Staff wanted a photo with the Empress



 Our Wish volunteers. Monica and her husband Bryan. Bryan was a wish kid as a teen. He is a cancer survivor. We love these two. Sweetest most compassionate couple. Blessed!



It was an awesome night for Ivy. She knew every second of it was about her. We are now on the countdown to DisneyWorld. 




When they told Ivy about her wish, and where she was going, she asked if there would be good food! Go figure!! Little foodie! 
                     Florida, here we come!



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Saturday, February 15, 2014

2 beautiful years

Pin It                       2 years of Ivy Joy

                         2 years of forever. 






2 years of squishy kisses and indescribable love, joy, and beauty.




Happy Forever Family Day sweet love! 


I will never forget the very first time I saw you eye to eye. 


It was like I had always known you.


You have taught me more than I could ever teach you.


And as much as you needed a family, your family needed you even more.




Oh how we love you! Forever and ever and ever....


At that time the disciples came to Jesus, saying, “Who is the greatest in the kingdom of heaven?” And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. “Whoever receives one such child in my name receives me. Matthew 18:1-5
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